UDSv4 - Forms and Documentation

The Uniform Data Set version 4 is now available for use at the ADRCs. The UDS contains longitudinal data, collected since 2005 during standardized annual evaluations conducted at the NIA-funded Alzheimer’s Disease Research Centers (ADRCs) across the country. Participants in the study represent the entire Clinical Core enrollment of the ADRCs, with cognitive status ranging from demented to mild cognitive impairment to cognitively normal. A subset of UDS participants are also evaluated with one of the additional sets of diagnosis-specific data-collection forms, the FTLD Module or the LBD Module.

For clinicians planning to administer the UDS, training materials are available.

For additional information on the development of UDSv4, see the UDSv4 Updates Page.

The UDSv4 is available in both English and Spanish.

This overview of NACC data outlines UDS study population, collection methodology, and up-to-date participant statistics.

To gain approval to access C2/C2T documentation outside of the ADRC program, please submit a Data Request.

Essential Documents

The Researchers Data Dictionary for the UDS is intended as the first and primary resource for those analyzing NACC clinical and demographic data. Updates to the RDD for UDSv4 are coming soon. See also this overview of the data available at NACC.

	Initial Visit (IVP)	Follow-up Visit (FVP)
Forms Packet, English The full packet, containing all data collection forms in English. Alternatively, individual forms can be downloaded below.
Forms Packet, Spanish The full packet, containing all data collection forms in Spanish.		In Development
Forms Packet, Mandarin The full packet, containing all data collection forms in Mandarin.	In Development	In Development
Forms Packet, Cantonese The full packet, containing all data collection forms in Cantonese.	In Development	In Development
Coding Guidebook The guidebooks provide detailed, annotated explanations of each form on an item-level basis, with instructions, operational definitions, and references.
Best Practices for Reporting Biomarkers
Data Element Dictionary In a compact format, the DEDs list all the variables and provide a detailed description, including data type, allowable codes, and information on skip patterns.
Guidance for UDS Submission Form packet checklist

Individual forms

English

	Initial Visit (IVP)	Follow-up Visit (FVP)
A1: Participant Demographics
A1a: Social Determinants of Health Optional Form
A2: Co-participant Demographics
A3: Participant Family History
A4: Participant Medications
A4a: ADRD-Specific Treatments
A5/D2: Participant Health History/Clinician-assessed Medical Conditions
B1: Evaluation Form - Vital Signs and Anthropometrics
B3: Unified Parkinson's Disease Rating Scale (UPDRS) - Motor Exam
B4: CDR® Dementia Staging Instrument Plus NACC FTLD Behavior & Language Domains (CDR® Plus NACC FTLD)
B5: Behavioral Assessment - Neuropsychiatric Inventory Questionnaire (NPI-Q)
B6: Behavioral Assessment - Geriatric Depression Scale (GDS)
B7: Functional Assessment - NACC Functional Assessment Scale (FAS)
B8: Evaluation Form - Neurological Examination Findings
B9: Clinician Judgment of Symptoms
C2: Neuropsychological Battery Scores file_save Instructions for the Neuropsychological Battery (C2) file_save Worksheets file_save CERAD Flip Book file_save MiNT Stimuli NOTE: Access to C2/C2T documentation is granted with an approved data request. For data requests approved after 2/7/2025, please reference the email entitled 'Data Request Number XXXXX from NACC' for the password. Please contact NACC at consnacc@uw.edu if you have a previously approved data request and need access to the C2/C2T documentation.
C2T: Neuropsychological Battery Scores for T-cog file_save Instructions for the T-Cog Neuropsychological Battery (C2T) file_save Worksheets
D1a: Clinical Syndrome
D1b: Etiological Diagnosis and Biomarker Support

Spanish

	Initial Visit (IVP)	Follow-up Visit (FVP)
A1: Información Demográfica del Participante		In Development
A1a: Determinantes Sociales de la Salud		In Development
A2: Información Demográfica del Co-Participante		In Development
A3: Historia Familiar del Participante		In Development
A4: Medicamentos del Participante		In Development
A4a: Tratamientos para la Enfermedad de Alzheimer y Demencias Relacionadas		In Development
A5/D2: Historial de Salud del Participante / Condiciones Médicas Evaluadas por el Profesional Clínico		In Development
B1: FORMULARIO DE EVALUACIÓN — Signos Vitales y Antropometría		In Development
B3: Escala Unificada de la Enfermedad de Parkinson (UPDRS1) - Examen Motor		In Development
B4: CDR® Instrumento para la Identificación de Etapas de la Demencia y Dominios del Comportamiento y Lenguaje NACC FTLD (CDR® con NACC FTLD)		In Development
B5: EVALUACIÓN CONDUCTUAL – Inventario Neuropsiquiátrico (NPI-Q)		In Development
B6: EVALUACIÓN CONDUCTUAL – Escala de Depresión Geriátrica (GDS)		In Development
B7: EVALUACIÓN FUNCIONAL – Escala de Evaluación Funcional de NACC (FAS)		In Development
B8: EVALUACIÓN – Hallazgos de la Evaluación Neurológica		In Development
B9: Juicio Clínico de los Síntomas		In Development
C2: Puntajes de la Batería Neuropsicológica file_save Worksheets file_save CERAD Flip Book file_save MiNT Stimuli NOTE: Access to C2/C2T documentation is granted with an approved data request. For data requests approved after 2/7/2025, please reference the email entitled 'Data Request Number XXXXX from NACC' for the password. Please contact NACC at consnacc@uw.edu if you have a previously approved data request and need access to the C2/C2T documentation.		In Development
C2T: Puntajes Sumarios de la Batería Neuropsicológica T-cog	In Development	In Development
D1a: Síndrome Clínico		In Development
D1b: Diagnóstico Etiológico y Biomarcadores		In Development

UDSv4 - Forms and Documentation

Essential Documents

Individual forms

English

Spanish

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